Accord 2016 winter by Spinal Cord Injuries Australia

Winter 2016

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35 Features

From the CEO From the President News Fundraising Daily living Policy and advocacy Regional round up

28 31 32 33 34 35 36

08 Dare to dream 12 The formidable advocate

Technology Review Legal rights Travel and leisure Calendar SCIA benefits Social media

Information and resources

Patron: His Excellency General the Honourable Sir Peter Cosgrove AK MC (Retd), Governor-General of the Commonwealth Of Australia accord is a publication of Spinal Cord Injuries Australia ACN 001 263 734 Incorporated in NSW Head office: 1 Jennifer Street, Little Bay NSW 2036 Phone: 1800 819 775 Fax: 02 9661 9598 Email: office@scia.org.au Website: www.scia.org.au

Editor Helen Borger

Designer Shauna Milani

Sub-editor Liani Solari

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Proofreader Rosemary Gillespie

Printer: Blue Star Group; ISSN 1448-4145. The opinions expressed in accord are not necessarily those of Spinal Cord Injuries Australia (SCIA) or of the Editor. They are published to create a forum for debate on issues related to people with disabilities. Original material in accord can be reproduced only with permission from the Editor. Information in accord is furnished solely as a guide to the existence and availability of goods or services. accord has neither the staff nor the facilities for testing and evaluating any of the services or items and therefore can assume no responsibility for the effectiveness, safety or quality of any such items or service. accord is funded by the New South Wales Department of Family and Community Services, Ageing, Disability and Home Care.

FROM THE CEO PETER PERRY

Breaking down the AGE BARRIERS In 2017, Spinal Cord Injuries Australia (SCIA) will have been around for 50 years. That’s not bad for an organisation that was started—as the Australian Quadriplegic Association—by a group of young men on the balcony of Prince Henry Hospital in south-eastern Sydney. While adjusting to living with a spinal cord injury, these men had plenty of time to think about the life they might be living and their aspirations for the future. All of that thinking and discussion led to the establishment of our organisation and the many advances for people with a disability that have resulted. In the past 50 years we have come a long way; those young founders and other people who have followed have led lives much closer to those of the rest of the population than might otherwise have been the case. However, it now appears that those who were at the forefront of the fight for self-determination are going to be the forgotten ones as the National Disability Insurance Scheme (NDIS) rolls out over the next few years.

Many of the founders of our organisation, and those who came after them and helped to create the SCIA of today, are now over 65 years of age and will be ineligible for the NDIS. Many of the founders of our organisation, and those who came after them and helped to create the SCIA of today, are now over 65 years of age and will be ineligible for the NDIS. I’ll say that again, because it’s hard to believe: people who are over 65 years of age on the date the NDIS reaches the area in which they live will be ineligible for the scheme. I must say, that is close 2

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to the ultimate irony—an irony that could only come from political expediency, a bureaucratic mindset or a combination of both. Those who are responsible for the scheme will tell you there are transitional arrangements in place whereby there will be “continuity of support” for those who currently receive services via state-based disability schemes. The trouble is, there are four problems with this approach: 1. “ Continuity of support” is yet to be defined. As I write this, a few days before the full NDIS rollout commences, nobody knows what this statement will mean in practice. 2. I f people aren’t currently receiving services from state-based disability funding, they will receive nothing from the NDIS, and if services are required in the future, they will be at the mercy of a profit-driven aged-care system. 3. A nyone who acquires a disability over the age of 65 will receive no disability services and will be at the mercy of the aged-care system. 4. Th e aged-care system is not equipped to meet the needs of people with a severe disability. When the Productivity Commission recommended the establishment of the NDIS, one of the main reasons stated was to end the “lottery” facing people with a disability whereby the funding and supports they could expect depended on the nature, location and reasons for their disability. It seems to me the lottery still exists for people over 65, many of whom fought for the rights of people with a disability, the ultimate expression of those efforts being the NDIS itself. SCIA will not accept this situation and will be doing all it can to change it. Watch this space. ▪

JOAN HUME FROM THE PRESIDENT

On the PRECIPICE About once every 10 years, I get goosebumps when I read about an event or issue that absolutely galvanises me. That happened recently when I read an article about the pioneering research of neuroscientist Professor V. Reggie Edgerton of the University of California, Los Angeles (go to http://tinyurl.com/ treat-paralysis). In a moment of serendipity, to my delighted surprise, I discovered Professor Edgerton was about to visit Sydney as the guest of SpinalCure Australia and the Faculty of Science, University of Technology Sydney (UTS), to speak with the scientific and medical community as well as the interested public about his work in developing the neurostimulator and the results of his human (yeah!) clinical trials. Spinal Cord Injuries Australia (SCIA) is also involved as a supporter.

improved ventilation, ability to cough and reduced dependence on a ventilator. That’s some list. Professor Edgerton admits those improvements have been the culmination of more than 40 years’ hard work. This is no overnight, sensational discovery. He has come to understand that the spinal cord post injury, far from being incapable of recovery as has been the past medical/ scientific dogma, is actually intelligent, plastic and capable of relearning with the right stimuli. He sees his work only being truly effective in collaboration with other therapies and treatments such as exercise rehabilitation, bionic orthoses, proven stem cell therapies and pharmacological developments.

To my layperson’s eyes, his work is achieving astonishing outcomes for people with chronic spinal cord injury. The neurostimulator concept involves two devices developed in tandem but used separately, both of which use currents of electricity to reactivate the dormant spinal cord below the level of injury. One device is surgically inserted close to the site of the original injury and activated in a manner similar to a heart pacemaker. The other device is used externally in the lumbar region in the case of paraplegia and in the cervical region in quadriplegia. This involves no surgical intervention.

SpinalCure Australia in collaboration with SCIA and Professor Bryce Vissel, the new head of Neuroscience at UTS, are working with Professor Edgerton to bring this exciting research to Australia and to build on spinal cord injury research locally. However, such a project requires considerable funds as well as community support. Duncan Wallace, CEO of SpinalCure Australia, will be launching a fundraising drive to help raise the necessary donations to bring this project to fruition. Although not yet the miracle cure that many yearn for, Professor Edgerton’s neurostimulation treatment is nonetheless a revolutionary game changer: it is imaginative and practical, achieves real improvements and doesn’t cost a fortune.

All of the paralysed volunteers so far have been male, relatively young and fit. But even up to 15 years post injury, they have recovered to a lesser or greater degree: voluntary movement, standing, stepping, hand and upper limb function, improved bladder and bowel function, normalised heart function, improved trunk control for sitting, improved temperature control, return of sexual function, improved sense of proprioception, touch and temperature,

Visit www.spinalcure.org.au to view Professor Edgerton’s lecture, and visit https://edgertonlab.ibp.ucla.edu for more information on Professor Edgerton’s research. Testimonies of Professor Edgerton’s subjects can be found on the website of the Christopher & Dana Reeve Foundation (www.christopherreeve.org), which provided some funds for the project. ▪

Professor Edgerton’s work is achieving astonishing outcomes for people with chronic spinal cord injury.

NEWS

SCIA helps plan for the NDIS

Disability Discrimination Commissioner appointed Alastair McEwin has been appointed Australia’s Disability Discrimination Commissioner. Alastair is a former CEO of People with Disability Australia (PWDA) and former manager of the Australian Centre for Disability Law. Until Alastair’s appointment, Australia had been without a dedicated Disability Discrimination Commissioner since Graeme Innes left the post in mid2014. Susan Ryan, the former Age Discrimination Commissioner, filled in as the acting Disability Discrimination Commissioner.

SCIA NDIS information session at Royal Rehab, Ryde.

Spinal Cord Injuries Australia (SCIA) is supporting people with disability to move to the National Insurance Disability Scheme (NDIS) as it rolls out across the country. The NDIS is the new way Australia is providing support for people with permanent and significant disabilities. It gives people with disability direct access to money, through the creation of an annual plan to fund the supports they need to live life and achieve their goals. The NDIS has been trialled over the last three years in a number of regions across Australia by the National Disability Insurance Agency (NDIA). The NDIA started the New South Wales (NSW) rollout of the NDIS on 1 July in the Central Coast, Northern Sydney, South Western Sydney, Southern New South Wales, Western Sydney, Hunter New England and Nepean Blue Mountains. The rest of the state will transition to the NDIS in a year’s time, on 1 July 2017. SCIA is committed to assisting people with disabilities to navigate the NDIS rollout. By helping people to maximise the funding and supports they receive under the NDIS, SCIA can secure a much brighter future for them. SCIA is hoping to talk face-to-face with as many people as possible to share information that will be of 4

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benefit to them before their NDIS planning meetings. SCIA is sharing the information via free community NDIS information sessions, which cover what the NDIS is, what it means for people with a disability, how it can be accessed and, most importantly, how SCIA can help people through the process. SCIA is also providing free telephone support and, where possible, a oneon-one, face-to-face service for SCIA members. Guidance is also being offered by SCIA on whether or not people think they are eligible for the NDIS, including if they have received compensation or are aged over 65. SCIA NDIS information sessions are being held in most of the 2016 and 2017 rollout regions. Visit https://scia.org.au/ndis to find out where the next session will be. If you aren’t able to attend any of these sessions, don’t hesitate to contact SCIA on 1800 819 775 or office@scia.org.au to request a session in your area, or for individualised NDIS information. Also keep an eye out for SCIA’s NDIS updates via https://scia.org.au/ndis, e-newsletter, Accord magazine and email. Visit https://scia.org.au/ndis to find out more about the NDIS process.

Dr Kay Patterson is the current Age Discrimination Commissioner and was appointed at the same time as Alastair. Also appointed was the new Human Rights Commissioner, Edward Santow, who replaced Tim Wilson. In response to the three appointments, Craig Wallace, President of PWDA, said: “We particularly congratulate Mr Alistair McEwin, who is well known to us at PWDA as a former CEO of our organisation. Alastair is a great choice and a strong advocate for the rights of people with disability. We very much look forward to working with all three new Commissioners in progressing the human rights of all people with disability.” Suresh Rajan, President of the National Ethnic Disability Alliance, said: “We applaud this announcement at a time when the national disability landscape is undergoing such significant change with the transition to the National Disability Insurance Scheme, and when people with disability are under increasing pressure to find and keep work.” Gayle Rankine, Chair of First Peoples Disability Network Australia, said: “Addressing violence against people with disability, removing barriers to accessing justice and improving social and economic inclusion by addressing discrimination in transport, housing, education, employment and health are crucial issues requiring coordinated, high-level national leadership.” For more details, visit http://tinyurl.com/disability-commissioner and http://tinyurl.com/new-commissioners

NEWS

Pioneering research Down Under American spinal cord injury neurostimulation pioneer Professor V. Reggie Edgerton shared his latest research during a visit to Australia in May. From the University of California, Los Angeles, the professor was a guest of SpinalCure Australia and the Faculty of Science at the University of Technology Sydney.

Fleeing with a disability

neurostimulation had improved the hand function of two people with quadriplegia, as well as the lower limb, bowel and bladder function of people with paraplegia, was hopeful. The people with quadriplegia are now able to grip small objects such as a cup. The professor is also conducting research to see whether non-invasive spinal stimulation can also achieve the same results.

He spoke about his groundbreaking research to a packed public lecture at Royal Rehab in Sydney. Spinal Cord Injuries Although non-invasive stimulation Australia also supported his visit. has its advantages, the professor says both implanted and non-invasive The professor has achieved promising stimulation need further development, results by implanting a device on the spinal as one may be more beneficial than cord that emits electrical stimulation the other, depending on the needs of below the level of injury. His research is individual patients. showing that people with paraplegia and quadriplegia are regaining some function SpinalCure Australia is working to bring during electrical stimulation and after the professorâ&#x20AC;&#x2122;s electrical stimulation stimulation is turned off. research to Australia. Duncan Wallace, CEO of SpinalCure Australia, said the news that

Visit www.spinalcure.org.au for more details.

The plight of refugees with disabilities was remembered on World Refugee Day. As people continue to flee Syria, Iraq and many other strife-ridden areas around the globe, 20 June marked the day to think about the enormous obstacles placed in the path of refugees with disabilities. The United Nations High Commissioner for Refugees (UNHCR) estimates that millions of people with disability are forcibly displaced. â&#x20AC;&#x153;Due to a lack of identification and referral procedures, poorly adapted services and poor access, hundreds of thousands of people with disabilities are effectively deprived of the humanitarian aid to which they are entitled,â&#x20AC;? the UNHCR website says. â&#x20AC;&#x153;People with disabilities are specifically vulnerable to physical, sexual and emotional abuse and may require additional protection.â&#x20AC;? For more details, visit: http://bit.ly/road_to

www.scia.org.au 5

NEWS

Let’s get serious... Overcoming ongoing systemic employment discrimination against people with disability may require the Australian Government to flex its supply chain muscle.

About 40 per cent of the disability discrimination complaints received by the Australian Human Rights Commission are about employment.

Willing to Work, the 2016 national inquiry into employment discrimination against Australians with disability and older Australians, found employment discrimination against people with disability started before they had a chance to show their expertise. “At the recruitment stage, bias, inaccessibility and exclusion are recurring issues,” the inquiry report said.

Among the report’s recommendations, the Australian Government is urged to consider how it can influence the supply chain; for example, by requesting that suppliers demonstrate commitment to workforce diversity strategies, implement non-discriminatory recruitment and retention practices, and introduce targets for employing and retaining workers with disability and older workers. As an information and communications technologies (ICT) buyer, government should also mandate its purchase of accessible ICT, the report notes.

The report noted the comparatively low employment rates for people with disability: only 27 per cent of people with disability are employed full-time compared with 54 per cent of people without disability.

Visit: http://tinyurl.com/willing-to-work for more details.

Nominate an SCIA Life Member A Spinal Cord Injuries Australia (SCIA) Life Member is someone who has shown an extraordinary commitment and contribution to SCIA and the empowerment of people with spinal cord injury. We’re asking our members to nominate someone they think deserves this honour for the Board to consider. Any SCIA member can nominate a person for life membership. Please note the person being nominated also needs to be a member (phone us on 1800 819 775 to check if you are unsure). Nominations must be received by 5pm on 9 September 2016 to be considered by the Board. Visit http://bit.ly/ominateLifeMember today to nominate.

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FUNDRAISING

Make your own fundraiser A variety of events has been organised in aid of SCIA, proving that you can make a fundraiser out of anything. A huge thank you to all of the organisers, volunteers and participants in this quarter’s community events with special thanks to:

A huge thank you to all the companies that took part in the Big Day Off and everyone who bought tickets. We had over 130 companies involved and raised $40,000 towards supporting people with spinal cord injuries and research into treatment. We hope you enjoyed taking part and will join us again in 2017.

• J oanne Hanson, who ran in the HBF Run for a Reason 2016 and raised $1,500. • L eonie Hibberson and the Holbrook Hospital volunteers, who organised an entertaining night of music bingo at the Holbrook RS Club and raised $2,000.

Congratulations to all the lucky winners. We hope you are now all busy planning what you will be doing with your Big Day Off. At the Australian Securities Exchange (ASX), Ivan won one of five days offered saying, “I’m pleased to see ASX has lent such strong support to a worthy cause. I’ll probably hold off until [the] warm weather returns before deciding on how to use my day off.” Another ASX winner, Stephanie, will use her day off to spend more time with her family. Whatever the winners choose to do, we hope they have fun and enjoy their extra day.

• Y uki Braybrook and the Lane Cove Concert Band, along with the Tambourine Bay Winds, Burns Bay Big Band and Stringybark Jazz, entertained local music lovers, raising $2,100.

Trusts and foundations boost services Special thanks to the James N. Kirby Foundation for the generous donation of $15,000. The donation will enable Spinal Cord Injuries Australia (SCIA) to install an Environmental Control Unit (ECU) in a share house located in Chatswood, New South Wales. The ECU will allow residents to interact autonomously with their environment to carry out their basic activities of daily living and reduce their care needs. SCIA’s NeuroMoves in Bankstown also received $8,969 in funding from the Bankstown Sports Club ClubGRANTS scheme. The grant will be used to purchase equipment for the NeuroMoves gym program.

Run for SCIA in 2016 This year we want to ask you to run locally and fundraise for SCIA. Have you ever wanted to experience fun runs like City2Surf or Blackmores Sydney Running Festival? Each year people across Australia take part in these iconic runs; so don’t let using a wheelchair stop you from joining in, too.

We would love even more companies to join us next year in offering a Big Day Off to be won by their staff. Not only does it raise money for people with spinal cord injuries, it is a fantastic employee engagement tool. If you want to hear more about it, visit bigdayoff.org or call 1800 819 775.

If you are comfortable taking part on your own that is great. If you need a friend, family member or carer to help you get up those steep hills, why not dob them in to run or walk alongside you? We will give them a nudge and let them know you are keen by sending them an email. Visit bit.ly/Run4SCIAin2016 for more details. www.scia.org.au 7

COVER

Dare to dream Prepare for a bigger and better life as you map out your goals and aspirations under the National Disability Insurance Scheme (NDIS). Helen Borger, Editor, accord

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he NDIS is expanding the horizons of people under the age of 65 who have a permanent and significant disability as it rolls out across the country. Many people are thinking big as they plan their transition to the new scheme, which offers reasonable and necessary supports that are related to a person’s disability and are needed for them to live an everyday life and achieve their goals. Duncan Wallace, CEO of SpinalCure Australia, is keen to relaunch into the wild. He has quadriplegia and before his injury was a regular scuba diver. But since then he has dived only once. That was on his 50th birthday, when he was assisted to a depth of 15 metres. Surprisingly, his underwater joy was matched by surface relief: an unexpected side effect after the dive was the absence of spasms and, therefore, no need to take anti-spasm medication for the rest of the day.

He dreams of doing one more dive, this time with the whale sharks in the warm, jewelled waters of Ningaloo Reef in Western Australia (WA). He’s not expecting an all-expenses-paid trip to WA but possibly the assistance of a carer to help him with personal care during the trip. Duncan is planning to transition to the NDIS with the support of Spinal Cord Injuries Australia (SCIA) and hopes it might lead to him living his diving dream as well as improving his life back on dry land. Importantly, Duncan has prioritised the need for a new standing wheelchair, as his existing standing chair is on its last wheels. Such a chair enables him to work a full day in the city and change positions, which has meant no pressure sores or urinary tract infections since he has had his existing chair. However, he doesn’t have the means to replace his chair. He

bought and subsequently maintained his existing chair using his own cash to cover the $20,000-plus costs, as the New South Wales Government equipment funding arrangements don’t extend to standing chairs. He hopes things are different under the NDIS. Duncan also hopes the NDIS covers family reunions. He is close to his parents, who live in Britain, but they are in their 90s and won’t be around for the long term. He wants to see them more frequently but he needs a carer to accompany him on the flights and for personal care during the visits. The same goes for his job: motivating donors to raise funds to cure spinal cord injury cannot always be done from the comfort of his Sydney office. Business trips to Canberra, Melbourne and other places also require a carer to accompany him. This glimpse of Duncan’s goals and aspirations is the start of what he hopes becomes a reality, with sustainable equipment, carer assistance and other services as he ages.

Duncan Wallace

Melissa Whitley also has her aims and dreams, with SCIA supporting her through the NDIS planning process. She has incomplete quadriplegia and lives independently in her own unit with drop-in support. However, she says the support is underfunded and the neighbourhood isn’t the quietest or friendliest at times.

When Melissa is not working, she attends a community participation program but she feels she doesn’t fit in. Also, the program is meant to help her prepare activities for the childcare classes, but she says she doesn’t receive the assistance she requires. This makes her feel disappointed that she is letting her workplace down by not taking any prepared work to the children.

COVER

Melissa is hoping her new NDIS package will enable her to move into a better supported accommodation model with people of similar disability, who she can befriend and go out with to enjoy the occasional meal, movie or rock concert. She’d also like the opportunity to attend a different community participation service that can provide adequate assistance to meet all of her vocational, physical and personal needs. Melissa also has a lifetime dream of going on an African safari, like those she enjoys watching on David Attenborough’s documentaries. However, she feels it’s far too expensive, so she has decided to aim for fulfilling her other dream of

Melissa Whitley

Melissa [hopes the NDIS] will enable her to [make friends she can] go out with to enjoy the occasional meal, movie or rock concert.

experiencing more affordable parts of beautiful planet Earth. But you never know—one day she might get to gaze over Africa’s rustling sub-Saharan grasslands and espy the commanding presence of a pride of lions.

Closer to home, getting the right support is also a priority for Richard Komorr. She works as a trainee teacher at a childcare Three years ago he was paralysed from the waist down two days after the insertion centre not far from her home. This is one of an epidural catheter into his spine to of Melissa’s passions and she loves seeing control pain following lung surgery. Over the children she calls her “little friends”. time he regained his ability to walk, but he Although her work helps her to engage with the community, she still feels socially continues to experience bowel and bladder problems, loss of sensation in his hands isolated. She says her co-workers are and feet, reduced strength and stamina, friendly but she feels too shy to ask and difficulty bending down. them out for coffee. www.scia.org.au

COVER The NDIS has contacted him to get permission to touch base with his doctor etc and he hopes to have a planning session with them soon. SCIA is supporting him through this process. Although Richard is walking now, as he ages he may need a wheelchair again. So before the NDIS, he and his wife Deborah planned ahead and moved into a more accessible home on a flat block of land. He says the new home is more suitable for his needs and he hopes the NDIS will help it to stay that way. Suitable work options are also important for Richard. Before his injury, he was working primarily in IT support and then retrained as an assistant in nursing. After his injury, he returned to disability support work, assisting people with behavioural issues. However, he questions his suitability for this type of work and is hoping the NDIS can help him retrain into web design. Richard’s injury has also meant that Deborah has been supporting him emotionally and physically. This isn’t easy,

Richard Komorr with his wife Deborah.

as he also struggles with chronic pain and interrupted sleep. Richard hopes the NDIS will provide him with professional support to give Deborah a break, allowing her to be his wife, not his ‘support worker’. Before his injury, Richard and his wife were avid skiers. They have returned to the slopes, but these days he must stick to the beginner hills with Deborah assisting. This means she misses out on what makes a snow holiday fun for her. Richard wants this to change: if a carer can assist him on the beginner runs, Deborah can ski the more challenging

The freedom experience is to experience freedom

slopes. He hopes the NDIS can fund a carer and their lift ticket. This snapshot of Richard’s dreams and desires is the beginning of what he hopes transforms into a well-rounded life under the NDIS. The NDIS may not solve all your problems but it can set you on the path to living the life you thought was beyond your reach. For information and assistance on planning for the NDIS, contact SCIA today on 1800 819 775 or visit http://tinyurl.com/SCIA-support ■

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The NDIS and Continence Care... Are you ready?

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FEATURE

Peter Harris, the formidable advocate.

Access and social justice warrior Peter Harris learned at an early age the value of standing up for others and battling bureaucracy. Joan Hume, President, Spinal Cord Injuries Australia

eter Harris, a lifelong resident of Perth, member of Spinal Cord Injuries Australia for more than 40 years, former metalworker, concreter, share farmer and primary school teacher, has been writing impassioned letters since he was about 16 years old. State and federal politicians, bureaucrats, local councils, bus companies, access committees, Australia Post, the Australian Human Rights Commission and editors of newspapers and magazines, both mainstream and disability-related, have all felt the sting of his indignant prose. If Peter sees an injustice, he feels compelled to do something about it, usually starting with a letter. He has achieved considerable success in his disability advocacy, both as an individual and working with local disability groups over several decades.

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Recently, Peter self-published his autobiography, A Life Recalled. He has packed so much into his life, both before and after his accident (caused by a fall from a balcony when painting the family home), that one book can barely contain the richness of events that make up his story. The accident occurred in 1973, leaving him with paraplegia at 41. At the time, he was married with three children. Another child, five-year-old Clive, had already died of neuroblastoma, a vicious childhood cancer. Peter was born in 1932 into a resilient working-class family struggling through the Great Depression and then WWII. He was the seventh of eight children. Life was tougher then; much more of a lottery for children of poorer families, especially before the widespread introduction of antibiotics, antiviral

FEATURE drugs and vaccines. An older brother, aged about 12 years and also called Clive, predeceased Peter’s birth by a few months, apparently of meningitis caused by an eye infection. Today, this catastrophe may have been prevented. The trauma of losing Clive had a profound effect on Peter’s family, particularly on his father, John. An unspoken grief lingered over them for much of their lives. Peter recalls that many years later his mother, Marie, told a visitor, who’d asked how she’d put up with the noise of all the kids when they were growing up, “When there’s a death in the family, there’s no noise, there’s no laughter, no fun, so it’s much better to hear kids laughing and making noise than the quietness and the sadness.” Peter acknowledges that his brother’s death profoundly shaped his own psyche and activism, enabling him to acknowledge “the bad side of life” and spurring him on to do something about it. In spite of this great family sorrow, Peter remembers his mother being stoic and practical, a good money manager and one of the greatest influences of his life. “We all just carried on as each life stage came along and that seemed to be how life was lived in my family,” Peter says. His mother who lived to just beyond 100 years, raised her family on the semi-rural fringes of south-eastern Perth—first in East Cannington and later in Rivervale, where Peter went to school and spent most of his formative years. His father was a carpenter and worked at the racecourse. In spite of the privations, Peter recalls never being hungry, eating mainly boiled and baked vegetables, sometimes meat, usually cooked on a wood-fired stove.

Peter has packed so much into his life, both before and after his accident … that one book can barely contain the richness of events that make up his story.

Peter Harris working as a volunteer with school student David Abbott.

He admits to receiving only a basic education. It was the upper-class kids who went on to the Leaving Certificate and probably to university. Transport was mainly by bicycle and often unreliable pre-war buses, which motivated Peter’s first letter of complaint (the bus company’s reply was sympathetic but not terribly helpful) and so a career was born. Later, when he was apprenticed as a metal spinner after the war, he used a pushbike to get to work. At the tender age of 17, with enormous cheek he renegotiated more favourable working conditions on behalf of his fellow workers. Peter met his future wife, Pam, at a Methodist Church Hall social and decided pretty promptly that she was the girl for him. Her father had other ideas and kept delaying his approval, partly because he believed that Peter was too evangelical, a bit of a bible basher. Parental approval was needed then as Pam was under 21 years of age. Eventually, they married in 1956 with a special licence and the marriage lasted about 28 years. They grew apart, not only because of religious differences but also the stresses of living with the disability that Peter had sustained.

The children made their own fun, fashioning bows and arrows and slingshots (called gings) and playing gleefully in the sandy dirt of the local bushland. Occasionally, they glimpsed Aboriginal people who were possibly living nearby.

During the early years of their marriage, Peter supported the family through working as a farm hand, making concrete tanks for water preservation in rural areas, as well as by share farming. His four children were born between 1957 and 1963. When the family returned to Perth in 1963, Peter worked in several positions in agricultural and industrial machinery until his accident in 1973. The shock and devastation of Peter’s injury led, quite unexpectedly, to a complete career change. Murdoch University in Perth was about to open and accept promising mature-age students, regardless of their previous academic achievements. Peter was awarded a place in the Faculty of Education to train as a primary school teacher.

Peter always walked, without shoes, to school, where he and his classmates played marbles, hockey and later cricket with very rudimentary equipment.

After graduating in 1979, Peter began teaching at Koondoola Special School, driving more than 40 kilometres each way—a task he found www.scia.org.au

FEATURE exhausting. As his marriage disintegrated acrimoniously, he moved into a respite facility, then a flat, then a WA ParaQuad home and, finally, a WA Government Homeswest unit in Ferndale, where he lives today. Peter’s teaching career certainly presented him with challenges he hadn’t envisaged, especially as he hadn’t received any specific training in special education. To continue at the school, he was requested to complete extra special-education units. Not being “academically inclined”, Peter chose to retire in 1986. He then took himself off to Bible college and subsequently started a late career in teaching Scripture to Year 7 students for the next 26 years. Alongside study and work, Peter developed his parallel career in advocacy. His greatest bugbears have been the increasing inaccessibility of so-called accessible parking; the abuse and proliferation of mobility parking permits based on dubious medical grounds; and the bureaucratic machinations involved in claiming the mobility allowance and other Centrelink benefits. One of his greatest achievements was his triumphant battle with Australia Post in an era of rapidly decreasing (and more expensive)

The shock and devastation of Peter’s injury led, quite unexpectedly, to a complete career change— courtesy, Peter says, of Prime Minister Gough Whitlam’s changes…

services and deliveries. Peter managed to negotiate a personal pick-up and delivery service from his own front letterbox instead of having to battle the time-wasting and frustrating exercise of dealing with his local post office. Peter, we salute your persistence: those Depression privations have honed the skills of a formidable advocate. ■ For a copy of Peter Harris’s book, A Life Recalled, P.K. Print, 2015, visit www.theanswerer.com.au

F I 14

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Are you completely covered? Underinsurance can leave you out of pocket if you need to claim expensive communications equipment, home or car modifications, or mobility aids. Geoff Nix, Blue Badge Insurance Australia*

ssistive technologies don’t come cheaply and it’s your responsibility to know what you’re insured for. First, let’s define “underinsurance”. You’re underinsured when something is insured for less than its actual replacement value. You might have a home-and-contents insurance policy and then modify your kitchen and bathroom and install a series of ramps. If these modifications cost $50,000 more than what a regular kitchen and bathroom would cost, unless you have specifically identified these costs and increased your total sum insured, your policy may leave you significantly out of pocket in the event of a fire or flood. The difference between what it would cost to replace your home and contents and the amount paid out by your insurer is the “underinsurance gap”. To help you evaluate your situation, here are six things to consider. 1. C heck your product disclosure statement Understand what is covered under your current policy. Nobody likes reading these (often detailed) documents. They are available before you buy your policy so you can be aware of what the insurance covers. Best to understand the details ahead of time rather than after the fact. 2. Consider your risks Make informed choices about the risks you face in any class of insurance. What does your emergency-management authority say about the local risk of fire or flood? Have you ever had a near miss when using a mobility scooter or electric wheelchair? Is your wheelchair covered by your home-and-contents

16 accord magazine

policy? And is it insured when you use it outside your home? 3. M otor vehicles converted for drivers or passengers with a disability This is a significant insurance issue to consider for people using converted vehicles. Conversions for wheelchairaccessible vehicles or hand controls can cost tens and even hundreds of thousands of dollars. Take a look at your policy and call your insurer to find out how your modified vehicle is insured. Is the whole vehicle insured for market value? While finding a replacement vehicle at current market value might be possible, it’s unlikely you’ll find a vehicle with the same conversions you have. Some specialist insurers offer a policy that applies a market value for the base vehicle but allows an agreed value for the modifications. While the value of the base vehicle can depreciate over time, the insured value of the conversion can be set at a replacement value. So if your vehicle was to be written off, you would receive a payment that represents the cost of a replacement base vehicle and the true value of the replacement of the conversions. 4. Mobility products Consider the risks with mobility scooters or electric wheelchairs, which can be expensive to repair after an accident. Also, consider any third-party damage or injury that might occur when you’re using mobility equipment. If you’re at fault in an accident and someone else is injured or property is damaged, you could be legally liable to pay compensation.

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POLICY & ADVOCACY

Squeaky Wheel

Contributors:

NSW taxi subsidy boosted The New South Wales (NSW) Taxi Transport Subsidy Scheme (TTSS) subsidy has been increased to 50 per cent of a maximum $120 taxi fare as of 1 July.

Greg Killeen, Senior Policy and Advocacy Officer (pictured above), has been working with Spinal Cord Injuries Australia (SCIA) since July 1991, initially as an Information Officer before joining the Policy and Advocacy team in 2009. He is also actively involved in a number of community, disability and government advisory committees as an individual or as a representative of SCIA.

Tony Jones (pictured above) has been working with Spinal Cord Injuries Australia (SCIA) for five years as a Policy and Advocacy Officer. Until recently, he also spent three years working as a Researcher and Policy Adviser to NSW Parliamentarian Jan Barham MLC. He has a degree in communications, and enjoys making a positive contribution to improving the quality of life for people with a disability.

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The 1 July start date for the TTSS subsidy came after advocacy from Spinal Cord Injuries Australia’s Policy and Advocacy team (SCIA P&A) and other community organisations. Initially, SCIA P&A believed the NSW Point to Point Transport Taskforce report recommendations to reform wheelchair-accessible taxi (WAT) services and increase the TTSS subsidy would be introduced at the same time as ride-sharing services were legalised and regulated earlier this year. Unfortunately, SCIA P&A discovered that Andrew Constance, the NSW Transport Minister, instigated a review of the WAT services and the TTSS that wasn’t due to start until late 2016 and any recommendations would not be introduced until early 2017. SCIA P&A wrote to the Minister in April, seeking a meeting with him to explain why the TTSS subsidy wasn’t increased at the same time as the ride-sharing services were legalised and regulated. In response, the timetable for the introduction of TTSS was changed. SCIA P&A can confidently claim that its recent communication with the Minister, in conjunction with its previous systemic advocacy in collaboration with other disability and community sector organisations, was the reason the Minister brought forward the TTSS subsidy increase start date. The subsidy increase will especially help people with disability living in rural and regional areas and travelling long distances, as well as people travelling in Sydney, where there is increasing traffic congestion and road tolls.

continue to advocate so the WAT service meets the needs of people with disability and WAT drivers are appropriately trained.

The subsidy increase will especially help people with disability living in rural and regional areas and travelling long distances … SCIA P&A is aware that some WAT drivers are not setting up WATs by moving the seats to provide access, are not attaching all four wheelchair restraints to the wheelchair, and are starting the taxi meter prior to the WAT being set up (although WAT drivers can legally engage the taxi meter if the driver arrives on time and is waiting for the passenger). SCIA P&A is developing a WAT Passenger Fact Sheet, which will be available soon to assist WAT passengers to understand their rights and responsibilities. SCIA P&A is also advocating for Transport NSW to develop a WAT Passenger Fact Sheet. Visit http://bit.ly/nswtaxi for more details.

Advocacy funding under review SCIA P&A is lobbying the Federal Government to prevent the loss of advocacy funding as the National Disability Insurance Scheme (NDIS) rolls out.

Although SCIA P&A appreciates the benefit of this much-anticipated and long-awaited TTSS subsidy increase to $60, SCIA P&A had been seeking a 75 per cent subsidy of a $120 taxi fare (maximum $90 subsidy).

State and territory governments are ceasing to fund the long-established information and advocacy services as they transition these services to the Federal Government as the NDIS rolls out. This is creating uncertainty among service providers, who rely on the funds to operate, and the people who rely on service providers’ resources and expertise—all of which may be lost without funding.

The NSW Government is still planning to undertake the WAT service review, including WAT driver training, in the latter part of 2016 and SCIA P&A will

Also, SCIA P&A has been receiving Federal Government National Disability Advocacy Program (NDAP) funding for many years to provide individual and

Squeaky Wheel

POLICY & ADVOCACY

systemic advocacy services. But SCIA has been notified that it will receive NDAP funding only up to 30 June 2017. Nevertheless, the Federal Government agrees that advocacy services should be funded outside of the NDIS. That’s because it is impractical for people with disability who are eligible for the NDIS to include information and advocacy (as well as peer support) services in their plans (on a fee-for-service basis), as these services are used only as needed on an ad hoc basis. Funding advocacy outside of the NDIS also removes any conflict of interest. SCIA P&A has lodged a submission to the NDAP review that highlights the need for all advocacy services to continue to be funded. Further information about the NDAP discussion paper and review are available at: http://bit.ly/adv_fund

ILC no replacement for advocacy Linking people with disability to community interest groups and other activities is no replacement for advocacy services. The National Disability and Insurance Agency’s (NDIA) Information, Linkages and Capacity Building (ILC) program will commence in 2018/2019. It will provide $132 million nationally to assist people with disability who are ineligible for the National Disability Insurance Scheme (NDIS). The ILC will link them with community interest groups such as sport and recreation, fishing, art and photography to name but a few. However, people eligible for the NDIS will also be able to apply for ILC-funded programs if these programs include activities identified as goals in their plans. SCIA P&A strongly supports the ILC initiative and its role with the NDIS but strongly believes that the National Disability Advocacy Program (NDAP) will need to be appropriately funded to enable advocacy agencies to support people with disability and their families and carers when access barriers occur. This is anticipated to increase due to more services and programs becoming available through existing and new service providers.

The NDIA is developing an ILC Toolkit to assist organisations to apply for the ILC funding. In June, Greg Killeen, SCIA Senior Policy and Advocacy Officer, was one of a small group of organisational representatives invited to provide comment and feedback on the ILC Toolkit.

Theatre access scrutinised SCIA P&A is communicating with Sydney’s State Theatre management to advocate for equitable access for people with physical disability. Currently, a relatively steep portable ramp with no handrails or curb rails is used to access the theatre’s mezzanine level, where the only accessible seating is provided. And the theatre has no unisex accessible toilets; people using wheelchairs are required to access the toilets in the basement of the hotel next door, which is approximately 65m from the mezzanine level. The State Theatre has heritage classification and is among the handful of Art Deco theatres remaining in Sydney— very good reasons why all members of the community should be able to access and enjoy it. Although the theatre has heritage classification, SCIA P&A is working with theatre management to ensure the theatre provides equitable access for all members of the community. www.scia.org.au 19

POLICY & ADVOCACY

Squeaky Wheel

Apart from the State Theatre hosting various performing arts, it’s one of the venues used for the annual Sydney Film Festival in June. Accessibility to major Sydney festivals, not just the film festival, is a concern. SCIA P&A has undertaken numerous actions to have these issues addressed, including advocating for the NSW Government to develop and implement contractual arrangements that would require festival organisers to only use accessible venues, along with equitable access to services and facilities when they seek funding and sponsorship. SCIA P&A will provide an update on the State Theatre advocacy in a later edition of accord.

Energy rebate update NSW Health Minister Jillian Skinner has failed to answer Spinal Cord Injuries Australia’s (SCIA) question as to why only people with quadriplegia who use power wheelchairs should be eligible for the Life Support Rebate (LSR), but not people with paraplegia or any other condition who require a power wheelchair. On 29 April, the Minister responded in writing to SCIA’s question: “Miss Stephanie Williams, Acting Executive Director, Integrated Care Branch, NSW Ministry of Health, has advised that in 2014, NSW Health was invited to contribute to the review of the LSR undertaken by NSW Trade and Investment. The advice provided by NSW Health was of a technical nature and confined to specifications for the full life-support

Rome wasn’t seen in a day

equipment provided through NSW Health on the approved list, such as oxygen cylinders and ventilators.” Jillian Skinner MP went on to mention the Federal Government’s Essential Medical Equipment Payment, of which SCIA P&A is aware. SCIA P&A has written to Jillian Skinner MP requesting that she address the initial question, as she failed to answer it in the initial response. SCIA P&A will report on the responses in the next edition of accord.

Drug lobbying continues Medication OsmoLax submission has overcome a hurdle to be heard at the next Pharmaceutical Benefits Advisory Committee (PBAC) meeting. In February this year, SCIA P&A wrote a submission to the PBAC requesting OsmoLax be included in the Paraplegic and Quadriplegic Program, which provides a limited type and quantity of bowel-management products for free to eligible people. When SCIA P&A followed up the submission outcome, the PBAC Secretariat had mistakenly thought the SCIA submission was a “consumer” comment on a current submission made by a pharmaceutical company and therefore hadn’t placed it on the agenda for the PBAC’s March meeting. The PBAC Secretariat has confirmed it will place the SCIA P&A submission on the agenda for PBAC’s July meeting. SCIA P&A will report on the outcome in a subsequent edition of accord.

Full rollout of the NDIS starts July marks the beginning of the full rollout of the National Disability Insurance Scheme (NDIS) following trial sites established around the country over the past two years. We will see a significant jump in the number of NDIS participants from July onwards. If you’re in one of the first geographic locations in the rollout, it’s likely you’ve already been contacted by the National Disability Insurance Agency (NDIA) through phone calls and letters. A new NDIA Quarterly Report released in April shows there are currently 24,866 participants with an approved plan. Looking at the details by region, the breakdown is as follows:

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• $ 819.9 million has been committed to 7,593 participants in New South Wales (NSW) • $496.7 million has been committed to 4,867 participants in Victoria • $208.5 million has been committed to 3,429 participants in the Australian Capital Territory • $185.1 million has been committed to 5,825 participants in South Australia • $146.3 million has been committed to 1,135 participants in Tasmania • $96.8 million has been committed to 1,882 participants in Western Australia, and • $7.6 million has been committed to 135 participants in the Northern Territory.

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24/05/2016 8:19 AM

Squeaky Wheel How the agency copes with the increasing number of participants entering from now on, especially in NSW and Victoria, we will find out soon enough as new NDIS plans are developed and approved. For those transitioning from statebased disability programs, it would appear that their current plan will be used as a guide in developing their first NDIS plan. Spinal Cord Injuries Australia (SCIA) is encouraging everyone to update the plan they currently have in place before they move across to the NDIS, as it’s likely it will be used as a template by the NDIA to help speed up the plan approval process.

Problems gaining access to goods and services? Spinal Cord Injuries Australia’s (SCIA) individual advocacy service helps people to resolve issues that affect them personally but may also involve other people, such as partners, family members, carers and service providers. These issues may include Housing NSW applications, Housing NSW maintenance, private and social accommodation, dealing with the Health Care Complaints Commission, access to premises, access to services, accessible parking, support with attending solicitors or the Guardianship Tribunal, aged care and a host of other issues that may affect you. For more details, freecall 1800 819 775.

If, for any reason, you are not happy with the planning process once entering the NDIS … it’s important that you ask for a face-to-face meeting, as is your right. If, for any reason, you are not happy with the planning process once entering the NDIS, bearing in mind that the pre-planning steps might be over the phone through a Local Area Coordinator, it’s important that you ask for a face-to-face meeting, as is your right. To help prepare you for this, a new price guide has been released for 2016, with funded supports for participants falling into three categories: core, capacity building and capital. Quoting from the price guide, the explanation for each group is as follows: • C ore—A support that enables a participant to complete activities of daily living and enables them to work towards their goals and meet their objectives. • C apacity building—A support that enables a participant to build their independence and skills.

POLICY & ADVOCACY

Technology n

means

Independence

Productivity

Connection

Where do you start?

• C apital—An investment, such as assistive technologies, equipment and home or vehicle modifications, funding for capital costs (for example, to pay for Specialist Disability Accommodation). An outcomes framework has been developed to measure how goals are being achieved across eight domains: daily living; home; health and wellbeing; lifelong learning; work; social and community participation; relationships; and choice and control. Your supports will assist in achieving your goals across these different areas. The price guide details the types of support across 15 categories. It’s worth familiarising yourself with this price guide, as it gives some explanations of the categories and, more specifically, the prices for different line items. There is flexibility in how participants are able to spend their funding within these areas. Don’t hesitate to give SCIA a call if you need any advice while you go through the pre-planning process. The 2016 price guide is available on the NDIS website at: http://www.ndis.gov.au/providers/pricing-and-payment

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www.scia.org.au 21

REGIONAL ROUND UP

Ivy brings sunshine

Our regional people

Craig Lees, Central West

Spinal Cord Injuries Australia’s (SCIA) regional team advocates for the rights and entitlements of people with disability living in regional areas. They are committed to creating independence, dignity and unlimited opportunity for people living with spinal cord injury. Our team looks forward to hearing from you. Lee Clark Northern Rivers Shop 27, Alstonville Plaza, Main Street, Alstonville NSW 2477 T: (02) 6628 3409 M: 0421 055 992 E: northernrivers@scia.org.au Craig Lees Central West/Mudgee PO Box 1140 Mudgee NSW 2850 T: (02) 6372 1892 M: 0413 367 523 E: centralwest@scia.org.au Glenda Hodges New England 20 Murray Street Tamworth NSW 2340 T: (02) 6766 6422 M: 0427 257 471 E: newengland@scia.org.au Mel Gorman Illawarra/South Coast Suite B, Level 9, Crown Tower Wollongong Central, 200 Crown Street, Wollongong NSW 2500 T: 02 4225 1366 E: illawarra@scia.org.au

Hayley with her son Riley and assistance dog Ivy.

Hayley Fagerstrom was hopeful and optimistic when she first returned home to Dunedoo at the end of 2014, after sustaining a T12 spinal injury and spending time in Royal Rehab at Ryde. Move forward 12 months and Hayley was feeling the strain of living with her disability in a rural area. Lack of opportunity, poor access and ongoing health issues were starting to take a toll on her physically and psychologically. Life for Hayley and her young son Riley was getting tougher. On my last visit, however, Hayley’s outlook had changed somewhat. A ray of sunshine, in the form of a black labrador named Ivy, had arrived. Ivy was provided by Australian Support Dogs (ASDOG). ASDOG is a “not for profit organisation that raises, trains and places accredited assistance dogs with people with physical disabilities. Assistance Dogs learn a vast array of skilled tasks to give their recipients the remarkable gift of greater independence and enhanced quality of life,” says ASDOG. After regular training and 12 months of intensive obedience training, Ivy was ready to meet Hayley. Ivy helps with everyday tasks such as picking up things from the floor, closing doors, taking off socks, using light switches, etc. Ivy is still a pup, so she will learn more as time goes on. Hayley believes Ivy also provides a mental health benefit. Before Ivy entered her life, Hayley battled on alone once Riley had gone to school. But now she has company. Ivy also walks with Haley when she takes Riley to school, which is an added support because it raises awareness of Hayley’s disability. Also, Ivy is an icebreaker for starting conversations about Hayley’s injury and its impact. Before Ivy, many people would find it uncomfortable or confronting to ask questions.

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REGIONAL ROUND UP Assistance dogs, like Ivy, are afforded the same access rights to the community and public transport as seeing-eye dogs that support those with vision impairment.

is ongoing until people have their NDIS funding in place. Receiving NSW funding also puts your name on the referral schedule for the NDIS.

If you are interested in knowing more about the ASDOG program, go to their website www.asdog.org.au or call 1300 788 721.

For more information, phone (02) 6766 6422 or email newengland@scia.org.au

Ageing and the NDIS

New moves down south

Craig Lees, Central West

Mel Gorman, Illawarra and South Coast

Time is running out for people with physical disability who are approaching 65 years of age and have no funded care or supports.

Peer support has been boosted, and new initiatives are in place or in the pipeline for the Illawarra and South Coast region.

At present, only people who already have, or at least applied for care packages will be eligible to receive funding for their disability-related needs as they age past 65. Nobody over 65 will be eligible for the National Disability Insurance Scheme (NDIS) which is due to start in the Central West in July 2017. For anyone approaching 65 (in my mind 55 or older), now is the time to seriously think about your future care needs if you want to live in the community as long as possible. Many have battled on for years with informal supports because they value their privacy and independence. However, everyone gets old, including unpaid carers and family members. The smart way to manage this transition is to become prepared, starting today. I am offering to meet with individuals and families to discuss your needs and options. Don’t leave it to chance. Contact me on (02) 6372 1892 or email centralwest@scia.org.au

Don't miss out Glenda Hodges, New England

New England is about to 'go through a very exciting time' as it transitions to the National Disability Insurance Scheme (NDIS), but not everyone realises they may be eligible. Many people with disabilities in New England have limited knowledge about the NDIS and some don’t realise they may be eligible for such assistance. The majority of these people have physical and or neurological disabilities and believe the NDIS is only for people with intellectual disabilities. Most people in New England who are on programs funded by NSW Ageing, Disability and Home Care (ADHC) are eligible for the NDIS and are on its schedule for assessment. However others, mainly those not receiving ADHC assistance, remain unsure if the NDIS will benefit them. Spinal Cord Injuries Australia (SCIA) has been talking to its New England clients, assisting with funding applications and providing information to help as many people as possible before their NDIS assessment. My advice about the NDIS to people in all regions is to continue to discuss and apply for funding options still available through the NSW Department of Family and Community Services, including Community Support Program (CSP), Life Choices/Active Ageing and the Individual Accommodation Support Program (IASP). This funding

We welcome Jerry Markoja to the Illawarra and South Coast peer support team. Jerry provides support in the Illawarra, while Bill Deaves continues to provide support in Shoalhaven. Also, the National Disability Insurance Scheme (NDIS) has been a focus of the Illawarra and South Coast region, with parts of the South Coast and Southern Highlands NDIS rolling out from July 2016 and the Illawarra and Shoalhaven NDIS rolling out from July 2017. We have held information sessions in Wollongong, Bega and Moruya, and we are helping members with pre-planning meetings. We have also held education sessions on travel and bowel and bladder, and created an Illawarra, South Coast and Southern Highlands newsletter. We are also working hard to get NeuroMoves up and running in Wollongong. NeuroMoves programs range between physically challenging and intense individualised training aimed at increasing function and independence, to a general gym program aimed at improving fitness, health, wellbeing and social participation. Don’t hesitate to contact us on (02) 4225 1366 or email illawarra@scia.org.au if you would like NDIS assistance, a copy of the newsletter or to provide feedback and offer suggestions.

When taxis go rogue Tony Leggett, SCIA member, Queensland

I know horror stories about wheelchair accessible taxis are a dime a dozen, but I thought I’d share my recent experience with a taxi company. Long story short, what should have been a five-minute journey to a train station after 8pm turned into an expensive, almost one hour wild goose chase. The driver entered the wrong details in the GPS, got hopelessly lost, and then turned off the meter, saying “no charge”, only to change his mind upon arrival. The driver in question had my TSS card but was unable to process the payment. He claimed my card was “broken” and refused to return it until I forked out over $30 for what should have been at the most a $10 fare (with TSS card). I emailed a detailed complaint with the taxi company the next day and, to their credit, I received a prompt reply. The fleet operations manager gave an initial positive response saying a supervisor www.scia.org.au 23

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would look into the matter and arrange a refund. From there however, absolutely nothing happened.

Victoria and the NDIS

After multiple unanswered emails I called to find out what, if anything, was happening. I spoke to a supervisor who informed me the driver insisted he’d never touched my TSS card and this claim had apparently been taken as gospel. Is customer satisfaction a secondary consideration compared to fee-paying drivers as they are the company’s bread and butter? Are end users simply there to provide enough income for taxi drivers to pay their licence fees?

Naz Erdem from AQA Victoria’s Spinal Injury Resource and Support Network (Spire)

Also, there are many other unanswered questions, such as: If a taxi driver turns off the meter and then later demands payment, how should an appropriate fare be decided? If a taxi driver can’t process payment from a working TSS card, is the passenger obliged to pay full fare? Have any crimes occurred here that can be successfully prosecuted? The first two questions I will follow up with the Taxi Council Queensland. The last one I will follow up with Queensland Police.

Repaid in kind Lee Clark, Northern Rivers

The Northern Rivers community has dug deep to help out a carer in need. For many years Jennifer O’Brien has been caring for others, including her children and grandchildren who have disabilities. Jennifer won a NSW Carers Award in 2015 and is an active member of the Lions Club and Lower Clarence Carer Support Group. When the time came for Jennifer to need equipment to help her access her community because of declining mobility and ongoing health problems, a number of clubs came to the party, providing funding for a power assist that attaches to her wheelchair. The clubs included: Lions NSW-ACT Save Sight; Lions NSW-ACT Public Health Care Foundation; Yamba Lions Club, Lower Clarence Carers; Maclean Lions Club; and Grafton Lions Club. Spinal Cord Injuries Australia (SCIA) and Lifestyle Comforts and Home Aid, Maclean, also assisted with acquiring and fitting the equipment.

The National Disability Insurance Scheme (NDIS) is rolling out across Victoria and age is a key eligibility criteria. The NDIS is being implemented region by region from July 2016 to 2019. Before the NDIS, many people receiving supports funded by the Victorian Department of Human Services (DHS) had their support package established in the context of tightly rationed DHS budgets and often for a single service, rather than via an assessment of their aspirations and goals as per the NDIS. We know from the NDIS Barwon trial site that people on rationed DHS packages had their packages restructured and in some cases increased. However, this doesn't apply to people who turn 65 by the time their region comes on line, as their age makes them ineligible for the NDIS. Australian Quadriplegic Association Victoria is concerned about this and is raising this issue with NDIS and community advocates in Victoria and will keep you informed of progress. ■

Home Care Services Quality home care and support, ‘Working in Partnership’ as your trusted advisor:

Jennifer’s daughter Jody, who now cares for her mum, says it is much easier to manoeuvre the chair with the power assist and thanks all involved who helped in the project.

• Individualised support plans developed to suit your needs • CSP packages – comprehensive budget support systems • RN support • Approved attendant care provider: LTCS, ADHC/FACS and multiple other funders

For more information on SCIA Northern Rivers, call (02) 6628 3409 or email northernrivers@scia.org.au

AINs and RNs are available for 1 to 24 hrs Call us to discuss your requirements: Alliance Health Home Care Services Tel: 9310 6511 Email: homecare@alliancehealth.com.au Website: www.alliancehealth.com.au

Accredited

Jennifer O’Brien (centre) surrounded by those who helped raise funds for her mobility equipment.

Wo r k i n g i n p a r t n e r s h i p www.scia.org.au 25

INFORMATION AND RESOURCES Coping Effectively With Spinal Cord Injuries: A Group Program Therapist Guide by Paul Kennedy This guide discusses group-based coping effectiveness training (CET) following a spinal cord injury. The corresponding workbook includes monitoring forms, homework exercises and other techniques to work on outside of therapy. Borrow it from the SCIA Library or go to: http://www.amazon.com/Coping-Effectively-Spinal-Cord-Injuries/dp/019533972X

After rehabilitation: 5 men’s experience of living with spinal injury: The first 6 months at home following discharge by Maeve Nolan This book examines the experiences of five men following their spinal cord injury, including the impact on their identity. Borrow it from the SCIA Library or go to: www.amazon.com/After-rehabilitation-experience-following-discharge/dp/3659874957

Willing to Work: National Inquiry into Employment Discrimination Against Older Australians and Australians with Disability 2016 by the Australian Human Rights Commission A report on the Australian Human Rights Commission’s inquiry into the right to work of older people and people with disability in Australia. It examines discrimination and employer experiences and perspectives, among other issues. http://bit.ly/willing_to_work

Accomable A service that helps people with mobility difficulties to find accessible properties around the world. www.accomable.com

It Ain’t Rock & Roll: The biography of drummer John Kerrison by Robin E. Hill John Kerrison’s promising career as a drummer stopped when he sustained a traumatic spinal cord injury in 1971, but he eventually found a way to play a full drum kit again. Borrow it from the SCIA Library or go to: www.amazon.com/Aint-Rock-Roll-biography-Kerrison-ebook/dp/B01EI7CHA6

Ya Sama! Moments from My Life by Tatyana McFadden with Tom Walker The book chronicles Tatyana McFadden’s life, from her birth with spina bifida in Russia in 1989 to her American adoption and international success in wheelchair racing. Borrow it from the SCIA Library or go to: www.amazon.com/Ya-Sama-Moments-My-Life/dp/0692696024

From There to Here: Stories of Adjustment to Spinal Cord Injury edited by Gary Karp and Stanley D. Klein Forty-five people tell their stories of having a spinal cord injury, including the trauma, confusion and adjustment. Borrow it from the SCIA Library or go to: www.amazon.com/There-Here-Stories-Adjustment-Spinal/dp/0971284229

Eleven Seconds: A Story of Tragedy, Courage, & Triumph by Travis Roy with E.M. Swift Travis Roy tells the story of the devastating injury he suffered 11 seconds into his first college hockey game. Borrow it from the SCIA Library or go to: www.amazon.com/Eleven-Seconds-Tragedy-Courage-Triumph/dp/0446521884 These publications and resources are available for loan or download from the Spinal Cord Injuries Australia SCI Resources and Knowledge Library. To borrow, visit library.scia.org.au, call 1800 819 775 or email library@scia.org.au. In addition to the library and a comprehensive range of information on our website, SCIA offers help and advice to people with a spinal cord injury and similar disability, their families and carers through their Information Services. SCIA can be contacted by phone on 1800 819 775, email information@scia.org.au, or visit scia.org.au/information-services 26 accord magazine

CMY

25 years 5mm bleed.pdf 1 5/7/2015 11:25:05 AM

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www.scia.org.au 27

TECHNOLOGY Graeme Smith, Ability Technology

iPad or Android? I’ve decided to buy a tablet computer but I’m confused about which one to get. Some of my friends have iPads while others have Androids. Which would be better? On my Windows computer I use a finger splint, Dragon speech recognition and a trackball. Can I use these on a tablet? Each of the tablets has strengths and weaknesses. While the iPad has heaps of built-in accessibility features, its limitation is in the area of pointing devices: there is no cursor and no USB port, so you can’t plug in a trackball or joystick and use them the way you would on a computer. Android devices do have a cursor and a USB port, so if using a trackball is important for you, an Android might be a better choice. You should also include Windows tablets in your consideration. A Windows tablet would provide complete continuity with your existing software and devices and would enable you to use Dragon speech recognition in full; iPads and Androids only have cameo versions of speech recognition.

Viewing a tablet on a large screen I like the idea of a tablet computer but much of the time I would prefer to use a big screen, especially for watching movies. I find tablet screens very small, although I enjoy their portability. What are the best options for linking a tablet computer to a bigger screen? If your tablet has an HDMI port or, in the case of an iPad, an HDMI adapter, an HDMI cable will connect your tablet to a larger monitor or a television. Another option is to link the device wirelessly to a television, either through an Apple TV or Google Chromecast. Some modern “smart TVs” (which link to your wi-fi network) can throw some content from your tablet to the screen (for example, YouTube movies), but that might be too specific and limited for your purposes.

28 accord magazine

Simple phone options—Phone options or iPad? I am looking for a simple phone system for a friend with a brain injury. They use an iPad—could that be used to make phone calls? Several options are available for landline phones and mobiles. The Oricom Care80 has six programmable buttons that can be labelled with pictures of people. This means your friend just has to touch the picture of the person in order to dial their number. Regarding mobile phones, there are several apps on iPhone and Android platforms that also support picture dialling. Alternatively, there are mobile phones that can be customised with a limited number of buttons, such as the KISA phone. The advantage of the Care80 and the KISA phone is they are dedicated to their purpose—your friend won’t have to navigate their way through an operating system and other apps to make a phone call. An iPad could be used to make calls, either by linking it to an iPhone through Apple’s Continuity feature or by setting up an account with Skype or similar. But the iPad could be unwieldy for phone calls and your friend would still have to turn on the iPad and navigate to the phone app to make and receive calls.

Brain control? I have heard about using the mind to control home appliances. Is this available yet? How does it work? This is certainly the next frontier in assistive technology. We have recently been testing a product called Brainfingers, which has a headband, amplifier and software. The headband responds to surface electrical signals generated from muscle movement, eye movement and brainwave activity detected at the forehead. The headband connects to the amplifier, which filters, amplifies and digitises the forehead signal. The Brainfingers software further amplifies the forehead signal and decodes the signal into 11 frequency bands of information, responding to eye movement, brainwaves (theta, alpha and beta) and muscle movement. The 11 bands can be used in combination or individually to produce virtual controls for mouse movement and clicks. Our trial was not extensive but sufficient to appreciate the enormous potential of technology such as this. Very exciting.

Ability Technology is in Northern and Western Sydney, Newcastle, Canberra, Brisbane, Melbourne and Adelaide. Contact our team at info@ability.org.au

TECHNOLOGY

Sore neck

Ability turns 25

I have been using a Quadjoy mouse with sip/puff for several years, but recently I have developed a sore neck. Is there another option that might involve less head movement and pressure on my neck?

I wanted to share with you the news that Ability Technology celebrated 25 years in the assistive technology field in June this year. We spend so much time looking forward—to new devices, new technologies, new frontiers—that we hardly ever get the chance to look back. But now we’ve had that opportunity and I have been thinking of the thousands of people that Ability Technology has helped over the past 25 years and the many people and organisations that have shared the journey and supported our work in various ways. We have many colleagues and friends at SCIA and among its supporters. To all of you, we say thank you for the privilege of contributing just a little to your journeys over the past 25 years.

If you wish to stay with mouth control, you can consider a device such as the IntegraMouse. It incorporates sip and puff, and requires very little lip movement for cursor control. It will set you back $3,000, however. Another option is the LipStick, which also requires very little mouth movement. It has a novel click method—by lifting the upper lip or lowering the bottom lip. It costs around $2,000. These may help your neck pain, but could cause pain in the hip pocket region. The IntegraMouse Plus

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REVIEW

Where am I? Helen Borger, Editor, accord

ost of us know where we’re going when we head out the front door. But what happens if you’re abruptly stopped mid-journey, stranded in an unknown location or involved in a serious accident?

When the children called 000, they were able to read out the latitude and longitude of their position as displayed on the Emergency+ app.

Jessika had a bruised neck and Belinda had a bad lump on her head. Lachlan, Jessika and Belinda recovered from their injuries. Evan, through rehabilitation, has been able to walk again unaided and regain some upper body function but he has limits; he continues Former police officer Evan Cobcroft, his to experience some neurogenic problems. partner, Belinda Nelson, and Evan’s children, However, he doesn’t like to think of what Lachlan, 15, and Jessika, 12, had spent a might have happened if the Emergency+ glorious day picnicking in the dramatic, app wasn’t at hand. ancient wilderness of Barrington Tops National Park in September 2014. The park’s Fire & Rescue NSW and the Triple Zero beauty made it a difficult place to leave, but Awareness Working Group—which is a as the afternoon drew to a close, the family national body of emergency call-taking reluctantly clambered into their car for agencies and their government and industry the trip home. partners throughout Australia— developed the Emergency+ app. It can be used on They began to wind their way slowly down smartphones and downloaded for free from the steep, dirt mountain road. Coming iTunes, Google Play and Windows Store to iOS, around one of the bends, Evan pierced the Android and Windows devices, respectively. leisurely, winding rhythm, yelling “Hang on, we’re going to hit …” Applying the brakes, Heidi Haydon, Spinal Cord Injuries the car slid out of a corner, hit a wall, rolled Australia’s Education Officer, has run her eye and landed on its roof. over the app. “It’s great. The home screen is easy to navigate for a 000 emergency or SES. Shaken and dazed, Belinda managed to free It’s also great that it’s got the non-emergency herself and then pull Jessika and Lachlan police option there, too,” Heidi says. “Given from the wreckage. But Evan remained your location services are turned on, the trapped, hanging upside down. Darkness locator coordinates are extremely accurate— had set in and they realised they couldn’t it’s a relief to know you’d be located properly get a mobile phone signal to call emergency in an emergency. services. No other cars had passed by for some time and no amount of hopeful eye “The ‘Info’ tab is fantastic, explaining what straining could catch a glimmer of house each call option should be used for. The lights in the distance. fact that it also has alternatives like Crime Stoppers, Healthdirect and National Relay Left with one option, Belinda stayed at the Service gives a broad choice for people scene to help Evan while the children took needing help.” Evan’s phone and ran until they finally picked up a phone signal about 2.5km away. Other emergency-related apps are also on They had no idea where they were. They the market, but the Australian Government only knew they were on an isolated dirt Attorney-General’s Department says people road somewhere near Barrington Tops. should be aware that not all of them can However, when the children called 000, do what they claim and could delay they were able to read out the latitude and emergency assistance. longitude of their position as displayed on the Emergency+ app on Evan’s phone. This Like all 000 emergencies, the Emergency+ app requires the user to call 000 and then enabled emergency services to pinpoint read out their position so their location can their location. be pinpointed. Evan, who now works as a Having located the children and then Evan civilian at Newcastle Radio Operations in the and Belinda, emergency services were able NSW Police Force, recommends everyone to free Evan. He was seriously injured, download the free Emergency+ app. ■ sustaining incomplete quadriplegia. The To download the Emergency+ app, visit others were also beginning to notice their bumps and bruises: Lachlan had a black eye, http://emergencyapp.triplezero.gov.au/ www.scia.org.au 31

LEGAL RIGHTS

Can Lifetime Care and Support participants claim damages? By Tom Mithieux, Slater and Gordon Lawyers

he Lifetime Care and Support Scheme provides for the treatment and care of people who are severely injured in motor vehicle accidents in New South Wales (NSW). The scheme applies regardless of who is at fault in the accident. In the context of spinal cord injury, eligibility is based on establishing a permanent neurological defect. Once a person becomes a participant in the scheme, they cannot claim compensation for their treatment and care needs, as the scheme covers these needs on an ongoing basis. However, participants in the scheme are potentially entitled to damages for their non-economic loss (also known as pain and suffering) and economic loss

(for example, damages based on their inability to remain in the workforce). This is dependent on participants establishing that another person has been negligent in causing their injury. The outcome of a damages claim has no impact on a participant’s ongoing entitlements to the scheme’s treatment and care needs. For participants who are severely injured as a result of someone else’s negligence, it is vitally important that they pursue their valuable damages entitlements. While it is often unclear whether someone has been negligent, in certain circumstances another person can be deemed to be negligent. Also, compliance with certain procedures is often needed to ensure a successful claim.

The Autoslide promotes inclusion by giving people a greater level of self-sufficiency. It enhances an active lifestyle by making exit/ entry effortless. No more fumbling with doors or waiting for assistance, the Autoslide is your personal doorman.

Attaches to most existing sliding doors 32 accord magazine

Participants in the scheme, and their families, should obtain legal advice as soon as possible to ensure their entitlements to damages are protected and pursued. Although the NSW Government is proposing to reform compensation associated with motor vehicle accidents, it is anticipated that participants in the current scheme will continue to have access to compensation for non-economic and economic loss provided they can establish their injuries have been caused by the negligence of another person. ■ Tom Mithieux is a Lawyer at Slater and Gordon Lawyers. For more information, visit www.slatergordon.com.au

TRAVEL & LEISURE

Beach holidays made easy By Fiona Jackson, Head of Marketing and Fundraising at Spinal Cord Injuries Australia

Going on a holiday where all your needs are catered for is no longer a dream for people with spinal cord injury (SCI).

ocated on Sydney’s picturesque Northern Beaches, Sargood on Collaroy couldn’t be better placed as a holiday destination. The resort offers a range of fully accessible self-contained studios and family apartments, plus a wide range of activities catering for all ages and abilities. Add accessible transport and facilities in the local area and Sargood on Collaroy becomes an ideal resort destination for people with SCI.

Last year, Delia Gray, Director of Allied Health and General Manager Community Services at Royal Rehab, travelled internationally to research accessible holiday and rehabilitation facilities. She used the knowledge gained to inform plans for the resort. While she saw amazing facilities and met really wonderful people during the trip, she says Sargood on Collaroy will be a world first, combining what she saw firsthand and more.

Sargood on Collaroy, which is set to open in December 2016, has all the facilities you’d expect from a resort—such as a gym, spa and barbecue areas—and a range of activities showcasing health and wellness, learning, leisure, sport and fitness.

Delia says Sargood on Collaroy will provide an alternative to returning to rehab facilities once people with SCI are back in the community and want to learn new skills, test equipment or access in-house services such as physiotherapy.

Run by Royal Rehab, Ryde, the resort is a world first. People with SCI have designed and built the resort for people with SCI. Relying on focus groups and extensive international research, the resort is not like a rehab centre and has a strong focus on independence centred on wellness and relaxation.

For Sydneysiders wanting to take advantage of what’s available at Sargood on Collaroy, Delia says they are offering Club Sargood, which gives members year-round access to activities and facilities.

The challenge is no longer

How can we be intimate? but How Intimate Can We Be?

“Sargood on Collaroy is designed for everyone with SCI to enjoy. We are in discussions with the National Disability Insurance Agency (NDIA), and Lifetime Care has already heavily invested and purchased two apartments, so we’re hopeful we’ll be able to accept bookings from everyone who wants to visit and stay,” she says. For more information about Sargood on Collaroy, visit www.sargood.org.au ■

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Experience the resort and all the activities on offer for yourself and be among the first guests to stay at Sargood on Collaroy. Royal Rehab is excited to offer accord magazine readers the chance to win studio accommodation for two adults and two children (one adult must have a spinal cord injury) for a threenight stay at this beautiful and accessible resort and location. To enter the draw to win this amazing prize, visit scia.org.au/sargood www.scia.org.au 33

CALENDAR

Events Industry SEPTEMBER 12-14 September APAC Forum, Hilton Sydney http://koawatea.co.nz/apac-forum

NOVEMBER 8 November The Etiology of Pressure Injuries: Deformation is a Cell Killer L’Aqua Cockle Bay Wharf, Darling Park, Sydney www.permobil.com.au 16-18 November Australian & New Zealand Spinal Cord Society ASM 2016, Stamford Grand Adelaide Hotel, Glenelg www.anzscos2016.com 21-22 November Wound Management: A Practical Guide, Rydges Sydney Central, Surry Hills, Sydney http://bit.ly/wound_conf 23-24 November Regional Support Worker Conference ‘At the NDIS Frontline’, Central Coast/Hunter, NSW nds.org.au/events/1450658867

DECEMBER 1-3 December International Indigenous Allied Health Conference, Pullman Cairns International Hotel, Cairns, Qld http://tinyurl.com/h27co7o 3 December International Day of People with Disability www.idpwd.com.au

Social JULY 16 – APRIL 17 Come sail on Tenacious, the world’s largest tall ship built for wheelchair users. Tenacious is a Jubilee Sailing Trust (JST) vessel that is visiting Australia until April 2017, following the establishment of JST Australia in 2015. The ribs, tracks and locking points on the ship’s deck enable wheelchair users to navigate independently even in rough seas. Lifts are also installed between the decks and are designed to work at any angle. The ship is calling into the ports of Sydney, Adelaide, Hobart and Melbourne. Day sails plus multi-day adventures are on offer. Seasoned through to beginner sailors are welcome. Those sailing alone are also welcome as buddying and watch systems are in place so everyone can feel part of the crew. Visit www.jst.org.au or call Liz Johnston on 0429 186 625 for more information.

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SCIA BENEFITS

SCIA membership is now free We’re excited to announce that from 1 July 2016 membership for people with disability, their immediate family and carers is free.*

If you recently renewed your membership and have paid through til 2017 or beyond, there will no charge for membership renewals thereafter. On top of this, SCIA is also offering great new member benefits: • I ndividualised NDIS pre-planning and planning support.

Call 1800 819 775 or email info@scia.org.au to become an SCIA member for FREE.

• A ccess to the latest NDIS information and how it will impact you.

• I nvitations to social and fundraising activities.

• a ccord magazine sent via email or post quarterly.

• E mployment advice and access through our EmployAbility service.**

• E-newsletter sent six times a year.

• A ccess to our friendly team on 1800 819 775 (free call) who can advise on anything spinal cord injury related.

• I nformation sessions and workshops run by our peer support team and other experts.

2016 0302 SCIA NDIS Support 90x130 OL.pdf 1 2/03/2016 3:06:50 PM

• F ree consultation with our NeuroMoves team to understand how exercise might benefit you. • F ree half hour consultation with Slater and Gordon Lawyers on will and estate planning.

CMY

• F ree two-night stay at our CHOICES apartment in Little Bay during your rehabilitation.*** • 2 0 per cent off your first order from Coloplast Australia, if ordered through Independence Australia. • A ssistance with discounted specialist car, home and wheelchair insurance from Blue Badge Insurance Australia Pty Ltd. * Membership for others remains at $10 per year ** Only available in specific regions. *** Only available for newly injured people and their immediate families and/or carer.

www.scia.org.au 35

SOCIAL MEDIA

The NDIS National Disability Insurance Scheme is here. You’re invited to Spinal Cord Injuries Australia’s FREE information sessions being held across NSW to help you secure the best NDIS package possible. You’ll get all the information you need to transition successfully into the NDIS - RSVP here bit.ly/NDISInfoSessions

How important is your independence? Building up strength to push his wheelchair and live without relying on others was the goal Dan set for himself, and smashed out of the park at NeuroMoves. But Dan says his biggest achievement is something he thought he’d never be able to do again - give his mum and dad a hug standing up.

Evan Cobcroft was trapped in his car and in need of urgent medical attention when his children used an app to direct emergency services to the crash site. “Who knows what could’ve happened if the emergency services hadn’t got there as quick as they did. I had no idea where we were, I didn’t even know what the road was called,” Evan said. Discover the app that saved Evan’s life: bit.ly/Emergencyapp

VIDEO NOW AVAILABLE: Neuromodulation pioneer, Professor Reggie Edgerton, recently lectured to a capacity crowd at Sydney’s Royal Rehab on “Neuromodulation for the treatment of spinal cord injury”. The full video is now available to watch on the SpinalCure Australia website. Please share with anyone who may be interested to know more about this exciting area of research that SpinalCure Australia are working to bring to Australia.

facebook.com/spinalcordinjuriesaustralia

linkedin/company/spinal-cord-injuries-australia

youtube.com/spinalcordinjuriesau

twitter.com/SCIAust

HOW CAN WE HELP? Australian Support Dogs Inc. (ASDOG) is a not-for-profit organisation that raises, trains and places accredited Assistance Dogs with people with physical disabilities, free of charge.

A trained Assistance Dog can  Take a cordless phone to its owner  Open and close doors & cupboards  Pick up any dropped items  Assist with dressing and undressing  Adjust bedclothes  Turn off lights and other switches  Retrieve items from tables, shelves, drawers and people, and so much more. Tasks can also be taught to specifically address an individual’s needs.

AUSTRALIAN SUPPORT DOGS INC. (ASDOG) PO Box 5492, West Chatswood 1515 Tel: 1300 788 721 Email: information@asdog.org.au Web: www.asdog.org.au

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SEE YOU IN 2017

Returns to Sydney and Brisbane in May 2017

Your choice, Your control On display will be the latest in assistive technology, aids and equipment, as well as options for mobility, communication, travel services and lifestyle options. The Independent Living Expo is an event that welcomes all those involved in ensuring better outcomes for people with disability of all ages. The Expo is of interest for everyone, whether a consumer, care giver, allied health practitioner, equipment funder or support organisation.

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